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my experiences and daily life as a parent of deaf children

A dad’s perspective…

Up until now, I’ve shared much from my experience and perspective as a mother of children who have hearing loss. Most of the articles, testimonies and stories that I have read from other parents on similar journeys to mine, have been very encouraging and almost always shared from the mother’s point of view. Over the past few months, I have connected with a few families grappling with the diagnosis and initial decisions regarding their deaf children and have seen how very real, yet often understated, the father’s grief so often is…a different perspective, a different lens through which the same situation is viewed. So, I asked my husband, Graeme, if he would mind sharing a little of his experience, and this is what he gave me to post on this blog…

[Since we are a family, and yet all experience this walk slightly differently, as the father of the three daughters you have read about, I thought it appropriate to share some of my experience of the journey we have been on. The shock of the diagnosis was tremendous and literally left me speechless. I remember clearly being semi prepared for Tahlita to have hearing loss but in all honesty was not expecting the same diagnosis for Hadassah. To find out that Tahlita’s hearing loss was as significant as it is, and then to be told that Hadassah’s was much the same, was like a bomb had just destroyed everything that I had planned for our family and future.

It was difficult trying to deal with my own emotions and at the same time being the supportive father and husband to a now emotionally broken family. In an instant life looked completely different. I had spent about 10 years planning the financial future of my family (yes, this had started even prior to meeting Bianca) and now all those plans seemed meaningless. Every plan and dream that had filled my thoughts and heart, all in one moment, suddenly seemed shattered. This experience was, at times, very surreal and often left me feeling very numbed.

I can remember very clearly after the twin’s results, just needing to speak to someone who was not immediately involved. I went upstairs, closed the bathroom door and called my father. He answer and I was unable to speak…the only sound I could produce was muffled sniffs as I attempted, very unsuccessfully, to hide the fact that tears were pouring down my cheeks. All I could think about were my two beautiful, intelligent little princesses that could not hear the world around them.
I guess a big question for me was also, “How was I supposed to be the husband in all of this?” After all wasn’t I supposed to be the strong one that could be there for my wife that was going through the greatest crisis in her life? I ended up realizing that we had started this journey together, we had received the diagnosis together, we were going to end this journey together and since we were busy losing our dreams and all ideas of normalcy together, it would be ok if we cried together too. And so started our new idea of life and engaging in a world we knew nothing about and certainly were not prepared for.

Being at work full time (and sometimes more than that) left me in a position that I was unable to participate in most of the initial visits to schools, therapy sessions etc. This, I guess, is fairly normal in most families that require one parent to scale down on work and focus more on the children. I would come home from work and get the full story about all the potential options for hearing aids, schooling etc. Although I was unable to physically be at all the places, Bianca certainly included me in all the decisions and this really helped me be part of the journey. It wasn’t easy getting going and understanding our new world but things certainly do settle down over time and what initially seemed foreign and terrifying eventually becomes more comfortable as time goes on.

Eden’s diagnosis was the next cycle of the washing machine which I felt was certainly our lowest moment. Trying to make sense of all your daughters being deaf was no easy exercise. I remember when she went for her screening test. She had fallen asleep whilst in the car with me, and so I rushed her off to the audiologist’s rooms to attempt her screening test again. Initially we attempted to test her while she was sleeping in her car chair with the doors open as it was a very hot day. We were struggling to get responses and reasoning everything possible in the hope of excusing our fears. The test was repeated again and again in the car. I was standing outside watching our hope of a normal screening test crumble. She was eventually taken out of the car and I carried her, still asleep, into the therapist’s rooms. Now with all doors closed, the tests were repeated again and again and with growing concern on the therapists face. What news awaited was obvious. Eden woke up, I held her close, again with tears rolling down my cheeks my thoughts were, “my baby, so beautiful and full of life but just can’t hear”. Bianca was waiting for the news. We had been much longer than expected, I had no doubt she knew there was a problem. None-the-less how was I going to tell her that her 3rd baby couldn’t hear?

As time has passed and we’ve become better at communicating as a family, I have really been able to embrace the role of “Daddy” more than ever. One of my favourite moments of the day is what happens during bed time routine. Little Eden is quite a character, and when I kiss her good night, her sweet little face lights up as she utters “Iluboo” and then presents her little hand to me which is usually signing the letter “F” to have me fold her fingers into the shape of the “I love you” hand sign. This is followed by much giggling from this blue-eyed princess. It really has been amazing to see my daughters move from a place of stagnation to a place where they are growing, speaking and signing and are more confident in who they are. Recently, Tahlita, was able to communicate very clearly to me that she not only wanted cornflakes, but also wanted the muesli in the ‘black box’, for breakfast. I left for work that day very grateful that my daughters were indeed starting to communicate effectively with me. The frustration of not understanding each other, and the ensuing tantrums, were being traded for understanding and communication.

They are my princesses and, as any father, I would give the world for them and the decisions we make for them have never been with a shortage of consultation, consideration and prayer. One thing that I realized is that we will only make it through this as a family, together. Therefore we cannot separate our decisions about any individual child from the impact it will make on our family as a whole. The biggest factor that has equipped and empowered us to move forward from the day of diagnosis, embrace our reality of being a family with deaf children, and actually now be at a place of renewed joy and hope, has been LOVE. We trust that a Love much bigger than our own, has exciting and wonderful plans for our family.

We have also been very blessed to have the love and support of wonderful family and friends who have also had to go through their own unique journeys of grief about our girls’ deafness. As Bianca has mentioned before, we are also extremely grateful for the support, love and guidance that HI HOPES early intervention programme has shown to us. Soon, Bianca will inform you of my intent of helping to do my part to fundraise for this organization, to ensure that families like ours aren’t left in the dark during a potentially, and at least initially, very difficult time of their lives.]